Thursday, January 14, 2010

Seeking your Amblyopia Stories

Share your Amblyopia Adventures

Amblyopia Kids was started for me to chronicle my daughter's "journey" and adventures. But, she is just one of many many kids who are affected by Amblyopia.

This website is a place for anyone impacted by Amblyopia to share our stories and lend support. If you are a parent of a child with Amblyopia, an eye doctor, or perhaps an adult with Amblyopia yourself - and would like to share your story, please email me at amblyopiakids at gmail dot com or send me a message on Twitter to @amblyopiakids .

You can either join in this blog as a contributor or we can do an email interview and I can showcase your story in a featured blog post. I'm just so very happy to know that my daughter is not alone in this journey and that by getting out there and talking about it, we are making a difference.

1 comment:

  1. Hi!
    I'm the mother of Noah, a 5 year old with Amblyopia. I have been following the blog and of facebook since the the first day we found out, about 4 months ago.I have to say, reading that I wasn’t the only one that very first night was so important for me. And for that i have to say to all, THANK YOU!
    Our story goes kinda like this...
    We moved to LA, from Costa Rica about 2 years ago. We had been noticing for a while that Noah's right eye would turn inwards but only when he was really tired. So I mentioned it to his pediatrician, and he said it was nothing, he even said that his eye test was 20/20 and not to worry. But my husband kept on insisting, even saying that in pictures with flash, he noticed something different in the reflection in that eye. So next time we went to the pediatrician and they did the eye test it was so obvious that he could not see anything when they covered his good eye. My heart was pumping so bad and I felt like crying. The nurse said that, at his age, they don't concentrate. But I knew. So when we went in to see the dr. I told her I was very concerned. She checked with the light thingy, and said it is nothing, "he's 20/20”. I asked for a referral anyway. The Dr. they sent me to, did not have an available appointment for almost 2 months. So we waited.
    When we finally went, it was terrible. The technician was awful. She asked me all these questions and if Noah tried to talk to her, she would ignore him. She tested him and again my heart stopped. My Baby couldn’t see a thing! How could I not have noticed? She told me she had to dilate, “hold him tight” She but in a drop, Noah moved, and she yelled at him! “Stay still. Now I have to do it again!” When we finally saw the Dr. he just told me facts, he has this, he has that, he needs glasses and he has to where a patch 24/7 if not he’ll be blind in that eye. When I started to ask questions he gave me photocopies and said read this, it’s all in there. See you in 2 month. I’ve never felt so bad, and I had to put a brave face for Noah. That night we were up all night investigating on line. He really didn’t have any of the symptoms at all. I wrote to a cousin of mine that is an ophthalmologist and he confirmed everything.
    The next day Noah went to school with his patch and completely dilated since she had put 2 drops in. I called the Dr. to ask questions like what his sight was. Since there is no history at all in my family, I hadn’t even conceded to ask. But the Dr. went on vacation for 3 weeks. We went for glasses that afternoon at lense crafters because it was the only place that would do it fast, and I could not imagine what it was like for him to be with the patch and not seeing anything. It was funny, wearing the patch was ok for him, but he didn’t want glasses. But as soon as he got them on, this huge smile popped on his face! “Everything looks real! And big!!!” he said. I didn’t know what to feel. I could’nt believe he could see through those glasses, I can’t see a thing with them!
    Anyway I’m going on too much. We have a great new Dr. we love her! She said to start with only 4 hours of patch a day, because he has moderate Ambyiopia, and to let the glasses do their job too.
    After 2 months he improved a little, and she was happy with the improvement.
    We, are more at ease. And a great deal of feeling ok, is do to the blog, Thank you thank you!